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19 Tiles

19 Tiles

When you become the parent of a child with complex medical diagnoses, the chances are you also gain a free pass to your nearest hospital several times a year.

At least, that’s what appears to have happened in our case.

Jaxon is 263 days old. He’s spent a total of 115 days of his short life in hospital.

We’re currently in the middle of our third admission with no sign of going home. Over 40% of his life has been spent in hospital.

I brought Jaxon into hospital just over seven weeks ago due to an increase in suspicious movements and concerns that he was experiencing Infantile Spasms.

We were awaiting results of an EEG from two weeks previous and I was worried that the spasms were increasing in both frequency and duration.

Upon showing the doctors the videos I’d gathered of his movements, my concerns were validated and we were subsequently admitted. We were ushered into a cubicle and the camp bed that would be where I would sleep for the coming days was propped against the wall.

Now over seven weeks on we are still here, despite his seizures being better controlled than they were and the spasms stopping.

We’re now here for feeding issues as Jaxon has never been able to really tolerate his feeds, only I’m not sure his medical team every truly realised how bad it was.

Jaxon is NG fed and currently on a four hour on, two hour off feeding regime four times a day which means he has to be fed through the night.

Something that isn’t safe for us to do at home until he has a gastrostomy which is scheduled for this week.

I feel like I’ve almost forgotten what it’s like to live at home. What I do know though is that I miss it terribly.

I miss the home comforts I take for granted on a regular day spent at home. I miss my bed and my quilt.

The hospital blanket is rough and uncomfortable. There’s a draft that comes through the window so I get cold quickly at night time.

I miss having a cup of coffee in front of the TV. If I want a hot drink here I have to go to the parents room as they’re not allowed to be brought onto the ward.

I miss cooked food. I’ve lived on sandwiches and salads since being here. The TV goes off at 7pm until the following morning so when our visitors have left for the evening I sit in silence.

Only it’s not silent, far from it in fact.

It’s a hospital so silence doesn’t exist. Despite being in a cubicle there’s still plenty going on outside which means it’s never really quiet.

There’s always nurses chatting or machines beeping, doors opening and closing or trolleys being pushed down the corridor.

I miss lying in bed and hearing nothing but the rain fall or sitting on the sofa, still, enveloped in complete quietness.

Well meaning friends and family want to visit but I feel as if I’m constantly surrounded by people. I don’t want to upset them by saying no but sometimes I’m just too tired of talking.

I don’t have the energy to hold one more conversation. I’m always talking to people it seems and there’s new faces on the ward and in our room each and every day.

The nurses and doctors see so many patients and their families each day that it would be impossible for them to remember the names of everybody. So to every nurse and doctor I’m “Mum”. It’s like a complete loss of identity.

No longer Em, Emz or Emsky. Just Mum.

I could go home. It’s not compulsory for me to stay. But I can’t face leaving Jaxon here at night.

My anxiety is too high for that. He’s only ever cried a handful of times and at almost nine months old he still doesn’t show emotion like a typical baby.

He can’t express his happiness or distress as a neurotypical child would. But I know him better than anybody else.

I understand of course many parents circumstances simply mean they are unable to stay with their children overnight but Jaxon is my only child. I have to be with him.

I still carry a lot of guilt from his birth, I feel I owe it to him to be here if he needs me, night and day.

When somebody walks in the room I switch, I pop on the mask and appear to whoever is stood there talking to me that I’ve got it all together and I’m coping with no issues at all.

Only they didn’t walk in the room ten minutes previous when I had my head in my hands, tears streaming down my face, feeling like I’m losing my grip on reality, not knowing how I’ll get through the next hour, never mind the next day or week.

I miss normal life. I don’t even know what normal is or if I’ve ever truly experienced it. In all honesty I can’t be sure normal even exists.

But I miss my normal. Our normal. I feel completely cut off from reality.

This must be how it feels in the Big Brother house, only I have visitors and my phone.

I also don’t have hundreds of cameras watching my every movement although it sometimes feels like I am under constant surveillance.

There are days where I take everything that is said to heart, feeling like everybody is getting at me. Other days I snap at whoever crosses my path because they’ve done something slightly different to how I would or because I disagree with them.

I miss the routine. I miss driving to therapy. It’s funny, before this admission I hated all the driving I did but I saw how much benefit it was having on Jaxon’s development so I knew it was worth it.

I’m so anxious in here. I’m anxious when I go outside. Having overcome agoraphobia and dealing with other mental health difficulties years ago, I now find it a struggle when I leave the security of these four walls.

I’m losing my confidence with the big wide world and the panic surges through me on the rare occasions that I do step outside. This is because I’m not facing the phobia I overcame years ago on a daily basis anymore.

I’m just stuck in here and even though I hate it, I feel safe.

What a contradiction.

The world still spins, people continue to live their lives and then I’m stuck. I feel like I’m in a different universe, completely detached from reality. I don’t know how long for or sometimes even why.

It’s one of those things that affects you physically, mentally and emotionally.

I’ve resorted to counting the ceiling tiles because I’m so bored of playing the same games on my phone, bored of doing the same wordsearch puzzles, bored of looking at the same four walls and the same view out of the window.

I’ve counted how many full tiles there are and how many incomplete tiles. There’s dots on the tiles, I could count those too but my eyes aren’t what they used to be and I’d likely lose my place quite quickly.

There’s 19 full tiles and 24 incomplete tiles.

Possibly the worst part about being here is that I’m in the same place that Jaxon was born.

I look out of the window and I’m greeted by a reflection of the very building where life as I knew it changed forever.

The building that I can’t even face looking at, never mind setting foot into. The trauma that surrounds Jaxon’s birth is still so great that seeing the maternity building is enough to set off my heart palpitations and transport me back almost nine months in time to that night when everything changed.

I know it could be worse. It could almost always be worse.

But for the time being this is my reality. My mind-numbing, soul-destroying, exhausting, frustrating reality.

 

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Emma Louise Cheetham

Meet Our Blogger

I live in Stockport, UK. I have Borderline Personality Disorder and Generalised Anxiety Disorder. After years of therapy and getting back on my feet I became a voluntary peer support worker supporting others with mental health issues. Then Jaxon arrived and my life changed forever.

View Emma Louise’s Profile

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